My life has gotten so pathetic lately I’m finding making small talk with other Moms at school has become immensely difficult. Most of the Mom’s I speak too know about my life with Tiara and then when I mention we are selling our house they usually say with excitement, “Oh, where are you moving to?”
me: ” I don’t know, a rental somewhere.” Smile
them: Deer in the head lights look. I see them trying to come up with something kind, witty or anything to say to my comment and I actually feel sorry for them. What do you say to a woman who has a disabled child with brain tumors, daily seizures, autism, is violent and now has to sell her house and doesn’t know where she is going? Awkward!
Then they notice I have a big bloody scab above my lip and my arms look like they have been attacked by a cat. More silence as she pretends not to notice the scabs she was just starring at.
The conversation then continues with something like: ” it must be hard keeping the house clean all the time?”
me: “Yay, it is.”
I then usually try to say good-bye and walk away because I’ve got nothing else to say and I am sure they would be grateful for my exit. If I can’t walk away without seeming like a total freak I usually ask about their upcoming weekend. Oh, another bad topic.
After she tells me about all the sporting events she must attend for her children along with the dinner party she is attending for her friends 45th birthday and of course managing multiple play dates and sleepovers she says:
her: “Are you guys doing anything fun this weekend?”
me: “Nope. Lou is working and we will be home watching the fart video” That’s my life people. Watching a fart video and or changing the songs on Tiara’s ipod.
Oh, I forgot you don’t know what the fart video is. Well, the fart video is an 18 second video taken in January when Tiara was in the hospital. Tabitha takes different videos and sends them to Tiara’s ipad so she has something to watch. Somehow Tiara manages to erase them all the time, so we constantly have to make new ones.
In this video Tabitha is begging Lou to fart for the camera and he keeps refusing. He finally does it and then Tabitha calls him a freak and disgusting. The end. Tiara loves this video more than anything. She especially likes when I put it on the flat screen in the family room, via apple airplay. Since it is only 18 seconds I have to tap the arrow every 19 seconds or she freaks out. If you leave her to try and do it herself she loses the video and then starts yelling, “It’s broke, it’s broke.”
As I sit there pushing play over and over again, 100’s of times each day, I usually contemplate the question, “How could this be my life?” God nor the universe seem to have a good answer for me so I usually try and think of something other than my life. That’s when it gets really difficult.
Since I don’t really shop, haven’t been cooking much, and have no plans to fix my house or garden, and can’t bare to think of all the tragedies going on in the world each day, I don’t even have much to think about. That’s when I get close to tears and wonder if I could be doing something different to make my life better?
See it goes like this: I’m exhausted, grumpy, dirty and Tiara wants my full attention at all times. Along with trying to be a decent mother to the other two and pay Lou some attention, I struggle with finding the time to write my blog lately. My thought process goes something like this:
“Should I write now and chance it she will get mad, scratch me, pull my hair or destroy the house I have to keep immaculate for showings or will I sit next to her pushing play on the ipad?” I have been choosing the latter but it is starting to mess with my mood, attitude and overall being.
Thank goodness a reader saved me from my own pity party on Saturday when she posted this on my Facebook timeline.
“Hope all is going well with you. We do notice when there are no posts. I thought your post about “What I was meant to do” this was inspiring. God did have his plan for you and your family…part of his plan was to make the rest of us appreciate all that we have. You rock Joan of Arc!
Thank you Karen for reminding me that I have another purpose other than pushing play on the ipad.
Prayers and Gratitude to every man and woman who has served in the Armed Forces and lost their lives while fighting to protect ours. Happy Memorial Day!!!
xoxo tiffani
Got to agree with Karen, you do rock and totally love you, Tiffani. Trust me, my life isn’t that exciting here either and just doing what I can do to get by and survive many days, too. So, we can totally have a pity party together!! Happy Memorial Day and hope today is a bit better for you. Hugs 🙂 xoxo!!
Thanks Janine! I guess being a stay at home Mom isn’t very exciting whether you are watching a fart video or Frozen for the 100th time. xoxo
Tiffani.
you are a wonderful mom life is hard I know with daughter her health isn’t good
and a person just has a lot of worries in life keep up the good work.
think you are a smart person
patricia
I wish I had the answer to that question! Too bad we live on opposite coasts or we could cheer each other up a bit in person! You are a great supermom, Tiffani and you do rock!
Thanks Sylvia, you rock too!
There has to be some way to record that in an endless circle to play till it stops. I don’t know what that is but could look into it if you wish.
I don’t push play over and over but lately my t s life is keeping my 20 from running away, breaking everything, and kicking and scratching because I have ruined his life because I try to keep him safe. Being more able is not always easier. We understand and support you even with the miles that separate us.
A friend just left me a message on Facebook about how to put the video on a playlist so it will keep playing over and over. Going to try that! xoxo
Being a stay at home mom is the hardest job in the world. Being a stay at home mom to a special needs child/teenager is even harder… It is an Ungreatful job that everyone tells us should be the most gratifying.. My husband asks me why I want to go back to work so badly… Uh, seriously?!!
I think work would be a serious vacation but then again I don’t work outside the home, so the grass is always greener on the other side. xoxo
Cause life just stinks (insert fart video here and smile) sometimes. that pretty much sums it up. we will always run across people that just don’t
Get it” but its our life. no regrets. keep doing what you do. you rock lady!
You are so funny Lisa and I love all the wonderful comments you post on Facebook daily. Your writing cheers me up, as does all the great pics of Deb. xoxo
Hello
I know just how hard it is….I am taking care of my severely, non-verbal autistic grandaughter. She also has Tuberous sclerosis which triggers seizures…I’ve managed to make myself believe that whatever her condition is should not stop me from going anywhere I want and doing things we both can I enjoy to keep my sanity….she enjoys listening to music ..so I’m keeping a list of things to do….For summer activities…We go to different parks where a band performs….There are people out there who truly understand…and some are willing to help me open the door when at the mall…. Someone would assure me she’s fine when she starts making noise which helps tremendously …takes away some stress. And when I see a person who looks at me funny….why I just look back at the from head to toe really funny….I figured we have every right to be where we wanna be whenever we want…..If they don’t like it. That’s their problem…
I’ve met some pleasant people in these endeavors….I love her and will do anything for her to be happy the best I know how…….so Cheer Up……God Loves You.
What a wonderful grandmother you are!!!! Keep on doing what you are doing!!!! xoxo
I am so sorry you are feeling so down. I can’t image your life and I wish I could help in some way. I am amazed by your commitment to your daughter. I hate to say it but I think I would have given up and have sent my child to a residential home. I know this may sound horrible to you and I apologize. You are stronger than I am.
I honestly do not mean to disrespect your daughter, or any decision you have made for your family.
Dear Tiffani,
A person has to have an incredible amount of intelligence, faith, and authentic joy for life to be able to live with such challenges and thrive. Your resilience has always amazed me, and inspired me to live the best life I can with challenging circumstances. I’m eternally grateful for that:) BUTTTTTTTTT, your only purpose in this life is NOT to inspire others but rather to live your best life under the circumstances. So PLEASE, don’t forget TIFFANI in this story. Because, it is only through your love and joy for life that you can be creative with your blog or anything else, and the house having to stay clean 24/7 is enough to put ANYONE over the edge!!! It’s time for some serious TIFFANI TIME, how can you make that happen? Pilates, your walks, breaks from home when the caregiver or grandma comes over???? YOU NEED THOSE THINGS NOW MORE THAN EVER!! I’m worried about you!!! One person can only do so much. We all love you and don’t want you to lose your sparkle and creativity any time soon. You are an inspiration to so many, but please put yourself on the to-do list!!
Big Hugs,
Marcy
I love your honesty and your tenacity, Tiffani. You are truly a hero in my book. Thank you for sharing your struggles with the world–your story has so much wisdom and beauty and merit in a world filled with so much superficial crap. I agree that you MUST somehow give to yourself–even if it’s changing perspective/going easier on what you expect daily of yourself/ finding some freedom even if it’s mental freedom/giving yourself permission to go slower- read a novel bit by bit or walk on the beach//ways to allow yourself to feel joy in the midst of it all. Your joy is a birthright!! You are SO DAMN STRONG!!!!! Let that sink in- please– you should be SO FREAKING PROUD OF YOURSELF. I love your heart.
Thank you Happy!
I just want you to know since I have been reading your blog I have realized that I am not alone. Not alone in how I feel. You have given me insight to my life as a parent of tsc
As a TSC parent it feels so good to know we are not alone. Xoxo
After a single hour of that mind numbing madness, I would have made it my life’s mission to figure out how to video loop. After 5 minutes, my life would have improved radically so I could have a peaceful hour or two.
That is a very easy solution to this problem.